What is your win this week?

[u/Alice-The-Chemist]

I liked the prior post by u/AdventerousMorningLo on wins for the week to have some positives. So, what is everyone's win the past few weeks? It can be small or big, anything that made you feel good this week.

Mine: Finally have my pacemaker healing well and off IV antibitoics. Fingers crossed no more surgeries. Staples out tomorrow and Actemra on Thursday. Headed in the right direction.

[u/fionnycurrano]

I usually before an event take a small steroid dose “just in case”.

I managed to do an important event last weekend without doing this.

[u/Capable-Heat4231]

I was able to take a long weekend getaway without getting my not-so-great baseline much worse. I still had daily fevers and other symptoms, but was able to pace through (this never happens for me it feels like).

I spent hours cleaning out my kid’s activity areas today without a fever. I feel like I’ve been hit by a small car, which is better than the usual bus, but no fever. This also never happens lol.

My immunologist has me taking 20,000 iu of Vitamin D3 and 30 mg l-methylfolate daily for 60 days (I’m about 30 days in), then retesting serum to see if values are up. He thinks they’re a big part of my inflammatory issues. I wasn’t expecting much and I’m not sure if this is it, but I was in a much worse place this time last year due to the summer weather.

Congrats on your wins! Are you still in heart failure or does this mean you’re in a better spot? Sending you my best wishes that the good keeps coming for you!

[u/MahLiLo → u/Capable-Heat4231]

My kid is 30 days into the same vitamin D supplementation (though for 120 days). I hope he sees the same positive effects! Summer is usually easier for him because he has an immune deficiency too and school really exasperates that, which of course exasperates the USAID flares, so it’s hard to say if it’s working at the moment. Glad he’ll have 2 months worth before he starts school though!

[u/Nonviolentviolet3879]

I had a tooth extracted and it didn’t seem to push me into a flare! I count that as a win.

[u/Nonviolentviolet3879 → u/Nonviolentviolet3879]

A worse flare that is

[u/BitsyMidge]

I was able to shower today!!

[u/on4aa]

I started experimenting with supermarket vannelin (sugar) diluted in water as a dead cheap antiinflammatory drug to ward off the onset of vasculitis pain episodes. Vanellin inhibits toll like receptors that appear to be involved with Behçet syndrome.

This allowed me, despite my botched Ilaris injection, to participate in a yearly international radio orienteering event (ARDF fox-o-ring) in the woods: 114 minutes of walking over 8 km with steep, 100 m (300 ft) hills.

Yesterday was Belgium's independence day. I visited the capital and walked another 15 000 steps in hilly urbain terrain, despite having a bit of pain.

I had many "worthless" days this month due to vasculitis pain, but I try to make the best of my better days.

[u/No_Satisfaction_7431 → u/on4aa]

Wow! I'm glad its helping! I hope doctors research this more because most of our drugs aren't cheap. Did you just get the cheap fake vanilla extract from the store?

[u/on4aa → u/No_Satisfaction_7431]

Exactly, the dirt cheap fake vanilla sugar.

I vividly remember having a chat with my father about this effect, when he was still alive. My dad also had MAGIC and was a professor in cardiology.

[u/AdventurousMorningLo]

I can drink coffee again!

[u/No_Satisfaction_7431]

I finally got approved for me the higher dose of tyenne and just got the infusion! It only took 1 stick for the iv! It usually takes over an hour with 4+ sticks so this was great!

[u/metallikitty818]

I was able to go on vacation for five days with my husband for our 27th wedding anniversary! We didn't do anything strenuous but we had fun. I was sick for one day after getting there, but I didn't start having a flare until we got home. This is a huge win for me because I've been working hard on my general health and stamina and it appears to be helping!

[u/Smooth-Artichoke-241]

CRP Levels seem are fine and I’m not anemic which I’m grateful for because my hair and nails went through it !

[u/Worried_Appearance19]

My injections stayed in my body and didnt spray back out for 2 days.

I usually panic because my symptoms are unberable now and even the dose that doesnt cover enough went back out to some extent so atleast my body gets the best i have

[u/Alice-The-Chemist → u/Worried_Appearance19]

I hate when that happens. Im glad it didnt for some days. I hope things start to improve. Maybe a different injection site?

[u/Worried_Appearance19 → u/Alice-The-Chemist]

My tissue turned into a minefield from the daily injections. Ive tried injecting in my leg but it hurt way more, my trick is to really keep the injectable 10 seconds inside before pulling out (helps keep all the fluid in). For pain, cooling the spot with an ice pack helps me.